For new research and feedback on study findings see below:
1. New study: Understanding emotional support
Do you or a family member or friend have bipolar disorder? We invite you to participate in an online research study that aims to better understand how seeking and receiving emotional support from close others may impact well-being. From time to time, everyone turns to a friend or family member to assist them in dealing with their emotions, and we would like to know more about this experience.
This is NOT an intervention study that has direct personal health benefits; we hope that it will improve understanding of peoples’ emotional support needs and how to meet them that could be used to enhance relationships and therapies in the future.
What is involved in being a participant?
You will be asked to recall and describe a recent experience when you received emotional support from another person, and to answer questions about your experience. This research project will be completed remotely on Qualtrics.com, and will take approximately fifteen minutes to complete. You must be 18 years of age or over to participate in this project. There is no compensation for participation.
The information you provide will be treated confidentially in accordance with ethical standards for conducting research. Participation is entirely voluntary and data are collected anonymously. Your decision whether or not to participate in this project, and your involvement will in no way affect your relationship with your loved one’s clinician or their treatment.
How to participate?
This research is being conducted by a doctoral student in Clinical Psychology at the University of California, Berkeley under the supervision of Dr. Sheri Johnson. If you are interested in participating, you can click here at any time, which will take you to the project’s informed consent page where you’ll find more specific information.
If you have any further questions or would like more information, please contact Benjamin Swerdlow by email at bswerdlow@berkeley.edu
2. MANY THANKS to participants and organisations that assisted with the study about informal carer’s lived experience of caring for people diagnosed with both bipolar and substance use disorders in Australia!
The research project was carried out as part of a Masters Degree and conducted by Zoe Gruneska under the supervision of Dr Lesly Berk and Associate Professor Tess Knight at Deakin University. Six in-depth interviews were conducted with carer participants across rural and metropolitan Australia. In addition, two participants submitted a written account of their experiences. Findings included:
1. Challenges reported by carers:
Initial confusion: Participants reported feeling very alone and at a loss about how to understand and deal with their new situation. It was difficult for example, to recognise that the challenging behaviour and mood instability of the person with bipolar and substance use disorders (referred to as “person”) was part of a mental health condition. Most carers reported dissatisfaction, lack of trust and helplessness over delays in appropriate diagnosis and treatment of the person’s condition.
Uncertainty and unpredictability: Even after the initial stages, most participants reported needing to be constantly hypervigilant. They did not know what bipolar disorder mood and especially what alcohol/drug related risky or aggressive behaviour they may need to deal with next.
Mental health crises: Times when the person was at risk of harming or killing themselves were particularly challenging for carers, and they felt overwhelmed by the responsibility of trying to keep the person safe. Carers reported that one of the most emotionally distressing and guilt-inducing experiences was being required to call the police to intervene in a crisis.
Inconsistent care and support: To some extent carer’s experience of challenges appeared to be related to perceptions of the quality of care and support provided to them and the person. Some carers reported that although health professionals and services assisted the person in a crisis, the person was not adequately followed up afterwards. Those living in rural/remote areas were especially disadvantaged by the lack of accessible health services, even when the person was experiencing a mental health crisis. Furthermore, although carers were usually the person’s main source of informal support, they were rarely included in discharge planning. Instead carers were left to deal with the person’s ongoing illness-related challenges alone.
2. Personal impact on carers
Some carers reported feeling “burnt out” and experiencing symptoms of anxiety, depression and stress-related disorders. They encountered a number of conflicting feelings (e.g. anger vs protectiveness towards the person) and felt guilty about actions that they sometimes needed to take to set limits with the person’s challenging substance-use related behaviour, or in the interests of the person’s welfare. They reported that the lack of family inclusive practice of health services/professionals led them to feel undervalued, overlooked and overwhelmed. Furthermore, it was common for carers to need time off work when the person was very symptomatic, or in some cases to cease work, with financial implications.
Feelings of isolation and loneliness related to:
- The withdrawal of people in their social network. Others did not seem to understand the carer’s situation, grew tired of its chronic nature or judged the person or carer negatively. Participants considered that this withdrawal was accentuated in response to the person’s substance-use related behaviours. This was particularly intense in rural/ remote areas and small communities.
- The deterioration of their social relationship with the person. In some cases, there was a striking association between the person’s aggressive behaviour when intoxicated and relationship deterioration.
3. Adjusting to the carer role
Despite these challenges, certain factors were associated with carer’s positive adjustment to their role such as:
Awareness: Carers suggested that it takes time and experience to become aware of the complexity of the person’s condition, how their substance use interacts with their bipolar disorder and their illness patterns. This awareness was viewed as potentially empowering carers to stand back and find ways to cope proactively with challenges.
Coping and self-care: Some carers expressed that much of their time centred on the person and they tended to feel guilty about their own needs (e.g. need for space or to do enjoyable activities or hobbies). Some experienced carers however, found positive ways to take care of themselves as well (e.g. accessing psychotherapy or exercising).
Acceptance: A certain amount of acceptance of the person’s condition by both the person and carer was recommended, especially if this was accompanied by a collaborative commitment between the carer and the person to work towards wellness.
Support from health professionals/services: All carers expressed a need for accesible information/literature about the person’s comorbid conditions and supports when they initially engaged with health services. Experienced carers considered that this would have made it much easier to adjust to their vital informal role. In addition, participants emphasised that this input needed to come from health services / professionals who really understood dual diagnosis and practical ways to deal with it. Appropriate care and support of the person and carer at various stages along the illness trajectory (e.g. in a crisis and community follow-up) was highlighted as a way to improve outcomes for people with bipolar and substance use disorders and their families.
Peer support: Privacy and confidentially were viewed as barriers to participation in peer support groups, and particularly when carers lived in small communities. Another barrier to engaging in support groups for some experienced carers was concern over taking on another carer role. Indeed, some experienced carers expressed the need for peer interaction that focused on what they had in common beyond their carer role.
In summary, there is very little information about the experiences and needs of carers of people with both bipolar disorder and substance use problems, which is surprising given that these conditions commonly occur together (Berk et al 2013, Cleary et al 2008). Our study suggests that these carers may experience considerable ongoing distress and objective burden over and above that encountered in acute bipolar depressive/manic episodes. This may be particularly related to the challenge of dealing with substance-use related behaviour that can place additional strain on carers emotional wellbeing, relationships, career, finances and general quality of life.
Furthermore, the literature highlights the negative effect of comorbid substance use on treatment response and course of illness in bipolar disorder (Mazza et al, 2009, Jaworsky et al., 2011). Thus, carers may inevitably be faced not only with problematic and unpredictable behaviour related to the person’s intoxication, withdrawal and need to access drugs/alcohol, but with increased bipolar episode frequency, severity and mood instability.
Although this study is limited by its small sample size and the generalizability of the results are uncertain, the in-depth reports from carers themselves provide valuable insights into the experience and needs of family and friends who support a person with bipolar and substance use disorders. The study flags the need to better educate health professionals and services to enhance the care and support of people and families affected by these comorbid disorders, and for more research in this area. It suggests that there is a vital need for better services and accessible information for all those affected by bipolar and substance use disorders, and informal carers play a significant but unrecognised supportive role. Arising from the findings, we hope to add an information resource to this website with strategies specifically to assist carers of people with bipolar and substance use disorders in the Australian context.
References
- Berk, L., Berk, M., Dodd, S., Kelly, C., Cvetkovski, S., & Jorm, A. F. (2013). Evaluation of the acceptability and usefulness of an information website for caregivers of people with bipolar disorder. BMC Medicine, 11, 162.
- Cleary, M., Hunt, G. E., Matheson, S., & Walter, G. (2008). The association between substance use and the needs of patients with psychiatric disorder, levels of anxiety, and caregiving burden. Archives of Psychiatric Nursing, 22, 375-385.
- Jaworski, F., Dubertret, C., Adès, J., & Gorwood, P. (2011). Presence of co-morbid substance use disorder in bipolar patients worsens their social functioning to the level observed in patients with schizophrenia. Psychiatry research, 185(1), 129-134.
- Mazza, M., Mandelli, L., Di Nicola, M., Harnic, D., Catalano, V., Tedeschi, D., … & Janiri, L. (2009). Clinical features, response to treatment and functional outcome of bipolar disorder patients with and without co-occurring substance use disorder: 1-year follow-up. Journal of affective disorders, 115(1), 27-35.
- Thomas, D.R. (2006). A General Inductive Approach for Analyzing Qualitative Evaluation Data. Cecil, University of Auckland.
3. BIG THANKS to all of you who gave feedback about the bipolarcaregivers website!
Here are some of our findings:
In response to the initial survey accessed on the homepage:
- 536 people responded to the initial survey on the website
- 97% found the information on the website ‘very useful’ or ‘useful’
- 90% said they would recommend the website to close/family/ friends who cared for a person with bipolar disorder.
- They reported that it helped them recognize bipolar disorder symptoms, know more about helpful ways to interact with the person, take care of themselves and feel less alone and liked the bipolar and family member/friend focus of the site.
In response to the follow-up feedback contributed by caregivers of adults with bipolar disorder a month later:
- 121 caregivers responded to this survey and most (between 86%-97%) found the information in the various sections they read ‘very useful’ or ‘useful’ and relevant to their current situation (93%).
- Sections on providing support, bipolar disorder and treatment/management were the most popular and rated most highly.
- Respondents reported that the website content confirmed that other family/ members friends were going through similar experiences to them.
- Most found the information empathic, easy to understand and the website easy to navigate.
- Nearly three-quarters reported using information from the section on providing support and 60% from the sections on working together and self-care.
ROOM FOR IMPROVEMENT: Based on your suggestions, over the coming months we will update the site to include:
- Additional information on a number of topics e.g. “bipolar II disorder”, the “science behind bipolar disorder” and “reducing stress”
- Exercise templates and examples to help apply information
- More resources to deal with family problems and on caregiver advocacy
WISH LIST: Some of you indicated that you need more than the static website offers and if funding becomes available, based on your suggestions we will include:
- A supportive aspect e.g. discussion board, email contact with a clinician, FAQ
- Interactive online tools to make it easier to apply the website information
- Anonymous personal stories and relevant news updates
- If funding becomes available we will also publish the website information in booklet form and advertise the website more broadly.
Contact me on lberk@unimelb.edu.au if you have any questions
